It’s pancake making day, Adam in right now in the kitchen cooking them for me. Like almost everything these days, my life is split into two parts, the part I can manage, and the part that Adam has to do for me. As he is on holiday this week, at his request, I made up the dough almost as soon as I got up, I then left it to rise for two hours, while he carried on sleeping. Then I woke him with time to have his breakfast before they were ready to cook. My part done, he is now in control. I don’t think there is a single thing other than feeding myself, that Adam isn’t physically involved in. It feels as though his takeover, has happened so quickly. I don’t mean that in a bad way, far from it, as I don’t honestly know any longer how I would cope without him. What I meant to say, is it just feels as though I am losing my independence at a speed that I never thought possible. I know that it is only a few weeks ago that I touched on this subject, but I believe there is far more to be said.
We all know that the time will come when we just aren’t able to do things. Over the last years, it has been a slow nibbling effect, something here, another thing there, but there was still this core of events that meant in my head, if not, in reality, added up to independence. The reality is, I couldn’t actually get through an entire day, without him. By the end of a week, well I don’t like to even imagine the mess that I would be in. Independence is a fragile thing, far more fragile than I ever imagined until now. There are a few things that I have tagged as equally independent from a list that the social services use. Their list is much longer, but these six seem to be the highest rating ones.
The first is eating. Eating isn’t just a matter of putting food in my mouth and swallowing it, eating to me is bigger than that. Clearly, there is the preparation of that food. If it is a case of measuring out a bowl of cereal and putting a tiny amount of milk on it, then that is more than possible. If you are thinking of a properly prepared meal, including meat and two vegetables, well that I can’t manage it. Even something as simple as an omelet is now beyond me, as there is one huge danger there, the same danger pancakes hold, the cooker. Let me near either hot pans or a hot oven, I will without a shadow of a doubt, burn myself. Even the microwave has conspired to become something not safe to use. I can manage the putting something in it bit, and setting the right time, but I almost always spill whatever it is once it’s hot. Part of the problem is a kitchen that was built for an able-bodied person, being in a wheelchair, means everything is just wrong and difficult. Once a meal appears in front of me, I can eat it, as long as it’s not too far from plate to mouth, then I spill it. I now avoid meat, it’s difficult to swallow and as I hate pulped food or sloppy things like mince, it’s easier to just steer clear. I can still eat, though, I often choke and I frequently find that it takes ages to travel from my mouth to my stomach. Is eating still independent, well strangely, in my mind, it still is. The above proves it’s not and my lose in this area has all happened in the past year.
The second is bathing. Adam now does all the preparation side, the fetching of clean towels, the laying out of my clean clothes and making sure I have plenty gel, shampoo, and conditioner. I can get in and out of the shower, I have my grab bars and my fold down seat, which allows me to wash myself as well as I can. I am sure, though, that there is probably a tiny strip in the middle of my back, that hasn’t been properly scrubbed for months, but it has seen both soap and water. I am content that I do manage to wash myself well enough, the problem is drying myself. I quite simply can’t reach my feet and stay down there long enough to do more than briefly dab at them. I need Adam to dry them properly for me. I did try air drying, but it was causing problems, problems that only being dry, could fix. That, and the fact that I forget to shower unless Adam reminds me over and over, well I can’t say that I am any longer independent in bathing. I was though until just a couple of months ago.
Going to the toilet. So far so good, but there is one huge but, I’m not sure for how long. I am finding the twisting to wipe myself, becoming more and more difficult. I think out of all the things that fall into the position of independence, this is the most difficult. Followed by the horror of not being able to manage my catheters by myself. There are some things that are just too personal, too private, that the whole idea of anyone, especially Adam helping me, is too horrific. For now, I remain independent.
Dressing and undressing. If it weren’t for the fact that I wear nothing but pajamas and dressing gowns, I would need assistance with both. As things are at the moment, well I struggle with my socks and Adam helps me when he is here. In an odd way, I still see myself as independent, as it fits with my life as it is now. In reality, I haven’t been independent since I became unable to manage either buttons or zips and that was years ago.
Socialising. I have no independence here at all. Even when people come here, I need Adam around, I can’t cope and become frustrated rapidly. I can’t get out of the house alone, but my biggest problem is dealing with people. As I have said frequently, I find the phone incredibly difficult. Being by myself, and seeing no one other than Adam, is actually all I want, not only what I feel comfortable with. So no independence exists here at all, but with the help Adam gives me when needed, I don’t actually feel I am missing anything.
Dealing with paperwork. Totally impossible for me to do anything alone. Adam has taken it all onto his shoulders.
I don’t think that independence is as simple as what is above. It isn’t all about actions that we can or can’t do, how we feel, isn’t really taken into account. I don’t see it as simply black and white, there is so much more to it. Out of the six things that I and others count as important to have, to say that I am independent, I have only one I can truly say yes to. I don’t know what it is that has changed in the last couple of months, as clearly it has been slowly building, but I do feel as though I have suddenly lost my independence, and I don’t know why. I am sure that without a doubt, that having to use my wheelchair, plays a part in it. But it just feels as though everything is slipping away from me, and more and more is being put upon Adam. Every time that I suggest getting help from the social services, he refuses to even consider it. I know that I would find it incredibly hard to have someone here, even for short periods of time, but it might mean that he isn’t left having to do everything for me. In some ways, it is that feeling that so much is being put onto Adam, that is upsetting me. I can cope with the fact I’m not capable of doing what I once did, I have to, just as I have coped with all the rest of it, but Adam is my husband, not my nurse, or my maid. But there is still more, something that is missing from this stark piece about functionality, they way that an assessment would view our situation, and as this is now far longer than I expected, this is going to be one of my rare two parters. Return tomorrow for what is to me the important part.
Please read my blog from 2 years ago today – 15/03/2014 – I don’t know what you are saying
I am once more sitting on my blow up cushion, it is actually now the third day in a row when sitting is an issue. It has to be one of the most unfair things about an illness like mine, I can’t stand or walk around for long so I have to sit, but sitting is too painful to manage, not just because of my backside but also my legs. It seems that sitting adds pressure to my some nerve grouping and once triggered then goes mad making my legs so sore that I often dream of being without them. I know it comes from sitting as it is a clear pain line, it travels not just down…….
First, on the technical side, in the section about eating there is one place where a part is written twice. I have done this so often especially if I have used ‘cut and paste’. I’ll accidently hit paste and whatever is on the clip board will print again. It is where you write about eating is okay as long as it isn’t to far between your food and your mouth.
And, how fortunate you are to have a man who loves you. I was lucky, too when I was too sick to care for myself for two years and my husband did everything. Yes, even the toilet duties because I couldn’t. Not one complaint. He was always there. That is the true meaning of “in sickness and in health”. He married me 11 years ago ( after living together for 5years) knowing where I was headed. These are the important parts of loving someone. We are fortunate to have that. It doesn’t mean there aren’t ever any problems but they are tiny next to everything else. I wish you much happiness. I hope they can one day find a way to fix this for you. Have you thought of writing a book? I think many people could benefit from your writing.
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Thanks for telling me I had the error, it’s now fixed. We are incredibly lucky to have our men, but well you’ll need to read today’s post, it explains my but in detail. As for the book, well, several have asked, but other than simply compiling what is already here, as I don’t think I would be able to write anything different, so in many ways, it’s really already written. I am though thinking about it. 🙂
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I have SPMS, I too get so much from your blogs as it explains a lot and I have not read it long. The parts that are not written in books are the parts you live plus no books or information has this content as I know of (20 yrs looking) I know everybody is different but the detail in your blog is massive. Obs SonniQ has mentioned about a book, and yes it’s already written…but could get lost on http://www.A book,to hold to cherish to be in medical libraries, to inform…I m a fan who is glad you are thinking about it,
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Thank you, part of the reason I started writing, was just as you said, I couldn’t find the details. Even the process of getting it as far as an e-book is daunting. It’s one of the ironies of life, I’m writing at a point when energy and fight for anything other than life, seems impossible. But I haven’t given up yet on it. Thank you for your support (((Hugs)))
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I haven’t read your post yet – but as far as a book. I don’t think you’d need to rewrite it. Keep it as it is. with so many posts you might want to cull out ones that might say the same thing and send it to a good self publishing co who has a copy editor who would put it all together. Of all the ones I looked at I like Balboa Press, a division of Hay House. They don’t do mysteries or romance it is all self help or inspirational – non fiction – books that you would fit with. You could google them easy. They would take care of all the details. The man I talked to suggested this publishing company for the book I’m writing. There are many other people out there who would relate to your story and would be encouraged.
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An amazing informative site, thank you for sharing your daily abilities with each of us who also have such a difficult time managing all the little things. I have many chronic medical conditions which have put me on disability last 7yrs, unbelievable I’m still alive at all, but I am like you. My legs get triggered in nerve root and hurt the entire day, but yet sitting is mostly what I am capable of doing. I have started a series of various Yoga stretching & Pilates ball trying to rebuild muscle tone, but at 54 with so many injuries not sure I can do this again. I just cannot give up, not yet…
😦 Keeping courage, sense of humor, strength is important in all of our lives. Reading and learning together is empowering and inspiring, thank you for all you are giving to our society 🙂 trish
Hi Patricia, There are so many of us who have had our lives taken over by chronic illness. As you have already discovered, I believe in sharing my life. Some day that’s good, others, well I’m humans so I do have my off days. I hope that you continue to find my life helpful to yours.
Take care 🙂